Is There A Point In Getting A Dx?

[moonmaiden]

Hi I'm a newbie, I have a long, frustrating tale (most of which I'll spare you kind people!). Is there a point in getting a diagnosis? I've pretty much already diagnosed myself. Have been struggling with Hashimoto's Thyroiditis for about 15 years now (unlike most - I've been hyper-thyroid for most of that time - heart palpitations, constant fatigue, insomnia, swollen thyroid, weakness, anxiety, always boiling hot), I've also experienced early menopause, osteoporosis, chronic sinusitis, intermittent IBS, and a recurring rash problem on my scalp - some of these symptoms date to my twenties (I'm now 49). I practically had to take hostages to a get a biopsy to confirm what I already knew. After the diagnosis, I'm told there's nothing that can be done until "your thyroid stops producing hormone - could be months, could be years, don't call us..yadda, yadda, yadda..."

Last January, I'd had enough and one day I was laying in bed (as usual) and I realized I couldn't even move my little finger without my heart pounding. I got up the next day and told my husband "I've had it - I'm either gonna fix myself or I'm gonna die from this - I was so weak.."

I spent one entire week (10+ hours a day) researching Hashi's and autoimmune diseases in general on the web. I put myself on what I thought was just a high protein/low carb diet and some very carefully chosen (and darn expensive) nutritional supplements. Within two months I felt better than I had in probably twenty years.

I feel pretty good now. My thyroid is no longer choking me when I lay down, the heart palpatations are long gone, I have a ton more energy, my mood is a hundred percent better. Even my scalp and sinus problems are improved though they seem to be more of a sticky wicket. Also, whenever I get a cold or anything that challenges my immune system - the thyroid symptoms tend to flare up too.

My point, I've been coming to the conclusion that my real problem is undiagnosed celiacs disease. I'm of one hundred percent Irish descent and from what I've read a lot of my symptoms seem to be gluten connected. I've been a gluten free diet pretty much since January of this year and there's been a real abatement of symptoms. Is there a point in my getting an official diagnosis? You might have guessed, I don't have a lot of confidence in doctors. My immediate family has been poorly/under/wrongly diagnosed for just about every condition we've had. (Sister died of congenital heart defect at 17 - even after years of hospitalizations - never "picked up" by the doctors. Father told to avoid exercise "at all costs" because of heart condition - now told that was "exactly the wrong thing and might have lived longer with exercise" - mother finally diagnosed with pancreatic cancer three days before she died despite six months of tests - other sister (still living) diagnosed with polio in infancy only to find out she really has cerebral palsy - 50 years after the fact)

Surely you can see why I might be dubious... and why I'd be happy to leave this world when my time comes without the intervention of the medical profession.

Here's the downside (of not getting a diagnosis) that I can see - Although I'm pretty much "gluten free" - I buy my bread in the health food store, etc... I know that I'm overlooking a lot in the way of additives and stuff - maybe not taking it as seriously as I would with a proper dx?

Sorry so long, I know I said I'd spare you the "long frustrating tale" but I did, in fact, spare you the ordeal I had in getting a boil lanced this week!

Any opinions will be gratefully received. Thanks for listening to my rants! moon

[Kaycee]

I think with a proper diagnosis, you will know one way or the other that what you are doing the right thing. I found before my diagnosis I didn't quite believe I was coeliac, and did cheat a little. But nothing seemed consistant, each time I ate gluten I would either get a reaction or not. But that was in the early days. Now if I eat gluten I do get sick. So now I don't cheat, because I do not want to get ill.

But if you are feeling so much better on your diet, keep at it. If you had blood tests it might turn out negative because you have already been gluten free for about 8 months. Additives might not be a problem with you. Because I got better for a time, only to have symptoms then recur, I decided to look in depth into what I was eating, and found that the more natural the food, the better I fared.

I have only been following the diet for six months and am the same age as you. Coeliac is the only health problem I seem to have, so it has been a bit rough adjusting to the fact that I cannot eat just anything and everything I want. It is hard becoming sick after years of no problems. Sometimes I feel I am just one big moaner.

I don't know if this helps, but I guess the main thing is that with a diagnosis you would still be following the diet because it makes you feel better.

All the best.

Cathy

[rinne]

Welcome Moonmaiden.

There is much you have said I can relate to, I'm new to this too, and I am proceeding with tests not because I have any confidence that they will diagnose the Celiac but to rule out other possibilities. I know that I cannot tolerate gluten and that is good enough for me.

I hope we'll hear more from you, I appreciate a good rant.

[Guest cassidy]

If you don't have much confidence in doctors (I too have been misdiagnosed and been through a lot) then why go to the doctor? From what I've read from other new people it seems like doctors tell you to go gluten-free, but don't give you much more advice. I think you would still have to get online and research all the names for gluten and ask questions here to figure out how it all works. Since this isn't a disease that needs to be monitored or medicated like diabetes or high blood pressure, I just don't see the need for a doctor if you don't want one.

I went to the doctor and asked the blood test and it was negative. I went gluten-free the same day as the blood test and was feeling so good by the time I got the results, that it didn't matter. I told the doctor how good I felt and he said I probably had it since the blood test aren't all that accurate. That was it, there was no follow up, advice or anything.

As for taking it seriously and findng the hidden gluten, it is challenging. If you have felt bad then it will be worth it. It seems like some new people think there is a magic shortcut where you can click on a website and all the direction, motivation and answers you need will be right there (not saying you think this way and I really wish there was such a place). Unfortunately, it takes research and hard work. If you researched other conditions and helped yourself in the past, then you can do it. This website is great and has good advice and information.

You could also try a gluten challenge. Find all the hidden gluten, remove it and stay gluten-free completely for two weeks. Then try a piece of regular bread and see how you feel. If you have a reaction, then I think you would pretty much know.

Getting an official diagnosis or not is very much a personal choice. Some people want it and other people don't want to go through the testing. It sounds like you have a decision to make - either go completely gluten-free or go to the doctor. Good luck deciding and congrats on getting this far. It is frustrating to have to be your own doctor, but it sounds like you are doing a good job.

[Ruth52]

This is an interesting thread because so many of us seem to be in the same position.

I guess the question is "What are the advantages of an official diagnosis"?

I also had a history of thyroid disease and it is because of the thyroid disease that I started the gluten-free diet. I had read that it may help reduce my thyroid antibody level. I had been on the diet for a number of months by the time I talked to my doctor about it. I had blood tests done but they were inconclusive. My MD didn't recommend a biopsy at that stage for two reasons.

1. I had been on a gluten free diet for a number of months and a biopsy would probably come back negative regardless.

2. My health had improved on a gluten-free diet. I was able to manage my Graves Disease without medication. I had twice attempted a gluten challenge and became unwell. All factors that indicated to him that removing gluten from my diet had a positive effect.

I treat myself like I have an official diagnosis because I know that eating gluten makes me sick. I don't cheat. I am extremely careful with the ingredients I buy and for the most part cook all my food myself.

But I know that I still would have liked an official diagnosis, mostly to give me some type of validation and credability with this disease.

[Guest nini]

I would like to mention the Dis advantages of an official dx, the most important being that (and this is based on my personal experience) you can be denied health insurance in the future because of a "pre existing condition" the insurance companies have a stigma about Celiac that it is a fatal condition (they obviously don't understand that if someone is following the diet they are healthier than most) and this can make it very difficult to get insured.

I say trust your instincts (I wish I had...) The gluten-free diet is a healthy one and there is NO reason to not be gluten-free. If you choose to be gluten-free then be gluten-free. If gluten is not the problem then you won't get better on the diet and you can still pursue other testing that won't be affected by being gluten-free or not. But if gluten is the problem, you get better on the diet, you will know. Especially if you ever get accidentally glutened after being gluten-free for a while! Yikes!

[penguin]

I could go either way. For me, it's great to have a dx because now the culinary school I will be attending will accomodate me since it'll be a documented disability. This is obviously hugely important. For me, the dx is worth it for that reason alone, because when I was dx'ed, I NEVER THOUGHT I'd ever be able to attend. Now I can

They've had people come through, already in classes, that ask for accomodation but they say things like, "oh, I never had it documented" or "it's never been formally diagnosed"....so it ties their hands, and that of the student.

I'm a fan of diagnosis, but I understand why people self-diagnose. I mean, if I had different doctors that were more ignorant of celiac, I'd be in the same boat.

[Guest cassidy]

I could go either way. For me, it's great to have a dx because now the culinary school I will be attending will accomodate me since it'll be a documented disability. This is obviously hugely important. For me, the dx is worth it for that reason alone, because when I was dx'ed, I NEVER THOUGHT I'd ever be able to attend. Now I can

I wrote earlier how my blood test was negative but I had a positive dietary response. My primary care doctor wrote me a letter for work stating that I have celiac and I need a special diet. I needed this for them to make special accomodations for business trips. I had to fill out all sorts of medical paperwork for the accomodation and it is now listed as a disability through work. So, even if someone goes the self-diagnosis route, they still can get documentation if necessary. In the future if I go to a new doctor I will tell them I have celiac. Most doctors don't question old diagnoses and I'm sure I could get a new doctor to give me documentation if necessary.